Starting Chemo December 2019
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I was lucky enough to get a free wig from the cancer center. I had it trimmed and while I’m not a huge fan of the color, I love that I have the option.
Lost my hair starting around 17 and shaved it around day 21. Should have done it sooner. It was a relief from the scalp sensitivity.Only other issue with round 2 of TC is that the bone pain is back with the daily injections of Zarxio. They gave me hydrocodone w/acetaminophen this time around which is a huge help for sleep. Stay strong lovelies!!!
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Looks awesome, looks like your profile pic with a trim. I like the color! hydrocodone w/acetaminophen, also known as Vicodin, it is great, I took if for 3 weeks after BMX with Lunesta to sleep in pain on my back. But it sucks weening off of it. A few sleepless nights.
I had treatment today and it was BIZARRE. A man died in the lobby and they were trying to revive him and ems, fire trucks, police were everywhere and I had to go in the back door. Then in the chemo room I met a really cool lady who had breast cancer 20 years ago, had full hysterectomy, now has stage IV pancreatic and a spot on her lung. She escaped Hungary during WWII at 9 from a camp and was sprayed with some chemical. She lived in Italy and a few other places before coming to America and speaks like 5 languages. And then I found out today is Holocoust Rememberance Day. What a strange coincidence. And she is Catholic. I never new Catholics that opposed what was happening were imprisoned also. And she was upbeat, loves my Dr., been with him for over 20 years. And my Dr. told me his other patient has had Stage IV breast cancer for 22 years and still going strong. Inspiring. I feel emotional today. That's the positive to my chemo place, it's social and like a family atmosphere, I meet new people, they often serve lunch, and many people love my Dr. and their parents went to him also, now the negative...….
I'm frustrated that I don't meet with my Dr. or PA before treatments, I go right to chemo room, they take my blood, check it and start treatment. No questions asked, no discussion of how I feel unless I initiate it. My nurse is loud and obnoxious and dismisses anything I tell her, but we have good social chats and she hugs me after, even though I am not a hugger, I prefer a technical conversation, lol. I feel like my treatment is going as it should, and I don't feel like that's a problem, I just worry and hate feeling neglected. I had to ask about kidney and liver tests, they never told me they were doing it. I was tested on 12/16 and levels were high but sample was hemologized and lab suggested retesting. I asked how often they test and she said every 4 weeks. Than I noticed it has been six weeks later they are retesting. I hate wrong answers from medical professionals!!!! Than she said insurance won't pay, which is bs, I have good insurance. Do your facilties test every time you have chemo? Both Dr and nurse think I'm fine. Than I find out she is going to a BS, not sure what is going on. And to top it off, it is the BS that did my surgery that I hate, but I'm not saying a word. Then she forget my Neulasta and I almost left. She said she was traumatized by the death, which is understandable. I just hope she didn't forget a chemo drug.
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jrnj.....that is crazy bizarre! Can you ask to see your Dr? I would just matter of fact say, “I would feel better seeing him/ her...”. How often are your treatments? I have seen my doc every treatment ( every 3 wks) except for the week of Christmas when he was out all week. I would think a doctor would have to review your labs before each treatment, just for liability reasons.... I have gotten the same labs CBC, liver and kidney function tests before every treatment. I usually always ask, “ ok, what am I getting now.”? Remember they work for you! They always give me copies of my labs too. Hope this helps a little
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Thanks Margo, I know, weird and inspiring, right. Your wig looks awesome too! I'm not a scarf person, but they have some pretied or with elastic you don't have to tie. Try TLC wigs at: https://www.tlcdirect.org/Cancer-Scarves-and-kerch...
I don't want to rock the boat. I did that with my BS and she got mean and nasty and I had so much anxiety over it. I want to keep this a positive experience. But I know if I badmouth the nurse to the Dr., it will be misery. The place is too small and we have a common chemo room, so can't avoid her. Or how do I question how the Dr. does business, that's how he does it. He is too busy to see every patient every time from what I'm told. But I ran into him in the hallway today and chatted a minute or too. I'm doing 8 treatments every other week. I saw him on the 4th treatment and will see him next time on the 6th. I don't think my health is in danger, I just hate not getting treated properly like other people. I tell myself just get through it, don't rock boat, and if I have a reoccurance later consider switching to Sloan. I will ask about the testing though.
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I also see my MO before each chemo...as well as all the panel of tests...def feeling progressively worse with each cycle, first time feeling bone pain, constipation (which my internal hemmroids don’t help) and just fatigue...it’s only temporary 🙏
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Hey ladies - I had my 3rd treatment of TC yesterday. Went well. Feeling the fatigue. Only temporary 🙏.
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yeah! Eigna! So you have one more?
Anyone doing radiation after chemo? I have learned a lot on the thread here on Radiation and also the one on Tamoxifen
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yes I’ll be doing radiation after chemo. Last chemo 3/9. Than ovaries out and straight to AIs. No tamoxifen.
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Also see MO or her NP day before each chemo to go over labs, side effects, questions, etc. Had few SE after first cycle but losing some steam after 2nd and 3rd. No bone pain or nausea but low energy, a bit winded, food doesn't taste good, overly emotional and irritable.
I asked MO this week if radiation could be considered after chemo due to high onco score. She said because of BMX and clean lymph nodes there would be no RADS and would start anastrozole, 6 week after last chemo, for 5 years.Kate both the style and color look great on you. Very nice. The grip band sunrisefish recommended has helped me a lot. No more creeping up in the back.
I still have a thin layer of my hair. Didn't shave it but cut to base of neck, then combed out as it was shedding, so sometimes wear a Newsboy cap and feel comfortable. However at apt, Tuesday, she told me that and, most likely, eyebrows and lashes will eventually go.
Needless to say it triggered my overly emotional, irritable, state. Forging ahead... This too shall pass.0 -
Margo - Yes I’m doing rads after chemo. Last chemo is Feb 18th. I have an appointment with radio oncologist next week so I will have a better picture when I’m starting rads. Will keep you posted.
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kat I understand how you are feeling. I don’t understand why radiation is automatic for lumpectomy regardless of node status but not for mastectomy. There could still be some cells lingering. I was not happy at all to have positive nodes but I am getting radiation due to lvi.
Everything tastes disgusting and it’s getting annoying!!
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Hi gals, for those of you facing radiation, I went through that in 2016. It's pretty easy and generally painless, but it's very hard on your skin. The one thing I really recommend is Miaderm cream. I used this religiously twice a day and my radiated breast was able to eventually support a mastectomy with direct implants (recurrence 2). My fail rate for implants after radiation was super high...like 50% or more. I contribute my success with it due to Miaderm saving my skin (and of course my gifted surgeons). You can find Miaderm on Amazon.
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Hello ladies! Day 5 of TC chemo no 3. I’m feeling better today but yesterday and before yesterday was difficult. I can’t wait to finish with chemo and move on. However I’m scared about radiation. I am more concerned with the long term effects. Sigh. But one step at a time. We will get there. Keep 💪! Happy Weekend!
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Eigna, glad you're feeling better at day 5. I go next Tue for round 3. This last week has been pretty good with a few minor things. But I'm already starting to feel anxious about cycle 3. But we are over halfway!!!
Sunerisefish, thanks for the Miaderm recommendation. I'll start radiation in April. Not excited, but will be so glad when chemo is done.
Kat333, where are you at in your cycles now?
How's everyone else feeling?
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Day 6 of round 3...feeling better! No taste buds but that’s ok! I just know the food taste good! One day at a time...I will also have radiation, but dmx first!
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Eigna... your getting there! I’m also concerned about radiation.... are you on the Radiation thread? There is a radiologist on there that is very knowledgeable.
Does anyone think TC irritates your lungs? I just have this nagging cough that I can’t shake....not coughing up anything...definitely going to address it Monday before treatment. I think if he says it’s irritating, he might not give me the last treatment.....
Anyone been thru anything like this?
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Margo-I have a dry cough since this last treatment but I feel like my throat is really dry and had some throat pain for a few days...plan to ask as well..
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havefaithtoday I completed cycle 3 on Wednesday. Having more side effects than the previous cycles, especially fatigue, but they are doable.
margo, after first treatment my lungs were congested. If I remember correctly finally cleared some time after second cycle.
JRNJ It does make me somewhat uneasy that radiation isn't being considered but trying to place my trust in MO which, no doubt, isn't always easy for us when going into the 'unknown'.
Sweet things taste most normal (though that's a stretch) and it's irritating serving food when you have no idea what it tastes like.
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Hope everyone is feeling ok and has a good and peaceful weekend...
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YES, I've been experiencing this weird chest cough thing too along with sort of a chest weakness sensation and when I go to take a deep breath I cough more.. no pain, no tightness of chest, no shortness of breath, no fever and I'm not coughing any mucus up. Occasionally I've had some heart racing and palpitations, but they've been infrequent.
I got this chest thing on the first cycle and the 2nd cycle too. I reported it to my Dr and they ordered a chest xray, which ended up being all clear. They don't really know what's causing it. I know Pulmonary Edema and Interstitial Pneumonitis are side effects of Taxotere, but my xray didn't show any fluid or anything so I'm not sure. I also noticed the last few days I've felt more tired and even going up the stairs outside today, I got a little out of breath. So I've been limiting my walks and activity somewhat, which I hate to do. Especially since on my 'good days'. But I just don't know what's going on. My MO said to check in with my Cardiologist and see what they say. So I'm waiting to hear back from her.
Most of the other side effects I can deal with, although I don't like them, at least they aren't 'red flags'. But when something doesn't feel right with my heart or lungs, then I get worried. So of course then the anxiety kicks in. Ughhhh.....this is the hard part of chemo. All these unknowns.
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Hi All,
I have been lovingly reading your posts as I too started 4 rounds of TC on December 18.
I did my third round this past Tuesday and only one more to go. Honestly though, I wonder if I will drive to that appointment and actually do it. I know I will but maybe...I just don’t want to.
I wanted to let you know that Neulasta has breathing side effects. I’ve experienced them a bit too. Just wanted a few of you to look there and know it will be over soon.
Also, I happened to have been misdiagnosed at MD Anderson in San Diego. So, at the time of my diagnosis, after lumpectomy, I went and did my 20 rounds of radiation then. At the end of that, I decided to have a second opinion...which I am grateful I did. But, through a curve ball to my treatment. A third opinion from Harvard confirms that my second opinion was correct. My RO said Rads treatment would have been the same before or after. Just wanted to let you know, I did that already. For me, fatigue and some sores, some sharp pains...but chemo is way more off the charts than radiation during treatment. Who’s to say about the long term effect of all this?!
I also am tired and mad that my oncotype score was so high (40) which brought me to these decisions. Well not really mad anymore, just tired. I keep thinking...I’m cancer free what is it I’m doing?! My margins were clear. All 75 cancers and 8 breast cancers, I tested negatively genetically. I eat well and did have a tough year...at some point, a lady needs a break.
Ugh.
Just wanted you to know I made it through the radiation train already. It’s doable compared to this for me. I do know we all have our journey.
Thanks for sharing your stories so I could read them silently in the background.
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Hi Mindful..... glad you found us.... interesting about the Neulasta causing breathing issues..... can you be more specific? I will look it up also. I have a terrible time with bone pain after Neulasta.
Havefaithtoday........sorry you have the coughing too.... I sent hubby to get some Mucinex and it seems to have helped. But I at least want to get a chest X-ray Monday to be sure it’s not serious.
I’m getting a little anxious about what’s next after RADS..... I checked out a ton of library books on howto fight recurrence with lifestyle changes. So far I haven’t felt like reading much and I want to eat whatever I want right now., lol
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I’m with you Margo-eating whatever has taste right now and that is def not the salads! Even ranch taste sour to me! Just trying to get through all the side effects and eat often
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mindful. Sorry you went through that. I had a tough time with drs too. There is no clear path. I got totally different opinions from different drs. And it is up to us to really decide. So much stress. Did they not submit oncotype? Did you fly to MA from CA for another opinion? Just One more you can do it. 👭🏻
After Neulasta my head and throat are swollen, sore throat, slight mucus cough, dizzy, tired, headache. I think it might be worse than the chemo. I think it affects taste also.
Im eating steak and chocolate and ice cream and soup and whatever else I crave to feel better. I think you need lots of protein for the brain damage. And I'm telling you sugar makes me feel better too. I can’t fall asleep and just ate some peanut butter and Nutella lol.
Kat with negative nodes you probably won't get it. But you should get an opinion from a radiation oncologist on your pathology. Does it show any lvi?
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Mindful, I feel for you. I've had some bumps dealing with the Drs at MD Andersen in San Diego. Not necessarily the same bumps you've had, but I understand the frustration and then the questioning of everything. I've had an extremely hard time accepting chemo and I too sometimes thing I might not continue, but I'm trying to just get through it.
For the most part all is fairly well at the moment, but this chest thing isn't getting any better, a matter of fact slightly worse. So now I'm wondering if I'll even be well enough for cycle 3 this Tues. I'm hoping I can get in to see my Dr Monday instead of Tuesday. It's one thing to have some of these side effects but knowing they'll go away after chemo makes them tolerable. But then there's the other side effects that you're not sure if they'll be permanent or not. Those make this jounrey hard.
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Hey ladies- I have a dry cough too since yesterday (day 5). I had it last cycle too but it went away just before cycle 3. I did mention it to my doctor but he didn’t say much and didn’t do much either. So at this point I will wait and see. Keep strong 💪!
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Hi everyone. Just a thought on the cough. It could be coming from reflux which chemo can cause. I take Pantoprazole every day and a Tums as needed.
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Search on the side effects of Neulasta include (I deleted some of them):
More common
- Chills
- cough
- fever
- sore throat
- ulcers, sores, or white spots in the mouth
Rare
- Bluish lips or skin
- pain, left upper abdomen or shoulder
- tightness in the chest
- troubled breathing
Incidence not known
- difficulty with swallowing
- itching, puffiness, or swelling of the eyelids or around the eyes, face, lips, or tongue
- nausea
- sores on the skin
- stomach pain
- swelling of the hands, ankles, feet, or lower legs
- unusual tiredness or weakness
- unusually warm skin:
Symptoms of overdose
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Eigna, do you have that sensation to cough especially when you take a deep breath in? I don't have asthma, but one time many years ago, I had some minor issues and had to use an inhaler for a little bit. This cough almost feels like a mild asthma reaction.
Amyhey, that's a possibility. But I'm not having any reflux. I have lower abdominal stomach pain and so I also have been taking Pantoprazole, which has helped. Are you just taking that through chemo?
JRNJ, thanks for that info on Neulasta. When I looked at my patient handout on it, I noticed it also listed ARDS- acute respiratory distress syndrome- which causes shortness of breath, trouble breathing, fast rate of breathing. It certainly doesn't sound like any of us are experiencing that. But good to know to just be aware. I wonder how long the side effects in general last for Neulasta? The bone pain lasted for about 5 days for me. Wondering at what point the Neulasta is out of your body.
Margo, I'm nervous too about what's next (especially the dreaded Tamoxifen). But I keep telling myself 'just get through chemo first'. I am a researcher and love to read up on whatever I can, but it does cause anxiety a bit so I'm trying to limit it.
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JRNJ - just wanted to add my two cents about the process during chemo. Like most of the others above, I have had the same labs before each treatment, and honestly, sometimes in between. There have been a couple times where they re-ran them just to check to see if my counts were coming up or whatever. Also, I meet with the MD or the NP before each visit and we go through what side effects I am experiencing in depth. Then the infusion nurses go through it again with me when I get to the chemo chair. I agree with others that you are right to demand more solid answers and treatment. I am in NJ also - down closer to Philly.
Everyone - I hope all is well. I am starting Taxol and Herceptin tomorrow, delayed a week. My last A/C beat me up and I ended up neutropenic and with awful mouth ulcers that kept me from eating and drinking much. When my white count started coming up, the ulcers finally healed, thank goodness!
I will say that I do think that the acupuncture did help a bit for the nausea. I will do it again if I need to after Taxol, but hoping I don't need it!
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